The 20th Anniversary of the Americans with Disabilities Act: A time to Celebrate and to Review our Commitment

This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.

My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine. My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.

As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.

Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009. While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.

The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks. Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.

Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans. I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.

The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage. Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

Hi Steven.What you are doing is Great.my name is Ileana Morales, and i have a 17 year old boy named David, and autistic teenager. David up untill the age of 10 knew very little words such as mama, papa and “toy” (i know all kids favorite word) anyways at the age of 11 he became high functioning autism, he would not stop talking and we couldn’t be happier, he was no longer shy he could actually look you straight in the eye and tell you what he wanted which he never did before, he started doing great in school and at home, but when he turned 16 (and the hormones kicked in) everything changed dramatically and not for the better. He was desperate for friends and he wanted a girlfriend and when he gets something in his head of what he wants he will not drop the subject. growing more and more frustrated. He started trying harder to make friends at school but little by little he came to realize that he was different that he was treated differently and that the girls just wouldn’t give him the same attention that they would to another teenager, he started getting more aggressive every day, David went from my sweet little boy to an aggressive teenager, things where getting out of hand i didn’t know what to do or say because anything would cause an outburst, i didn’t know who to turn to either, the treatments weren’t helping and i didn’t want to result to treatment with drugs, he even started hurting himself with any object he could find or bite himself really hard or smacking his head repeatedly that it would even cause him a terrible migraine. He would kick and punch doors, throw things all over the house, he would cry to me saying ” Mom please, help me i have no friends, I’ll never have a girlfriend, i’m a disgrace” and that would just rip me apart inside, he was frustrated and so was i. I enrolled him in the best buddies program at school, but after every outing, he would come home more depressed, he would tell me that the regular kids didn’t want to talk to him (which honestly defeats the whole purpose of the program). Well one day, i started talking to the mother of one of David’s classmates, Rosa, and we decided to open a club, it all started when Rosa through a sweet sixteen party for her daughter, and all the kids were so happy all week, planning on what to wear, how to dance which the teachers at school showed them how to do. David didn’t have not one outburst all week which for us was a miracle and they ended up having a blast at the party. The following friday i picked up seven high functioning friends of davids in my van with the other mother, Rosa, and we went to “hang out” at the movies “like the regular kids”(in the words of my son) this was the first time they had ever gone to the movies with friends and they would not stop laughing and talking, just being the teenagers that they so desperatly craved to be. Rosa and myself came out of those theaters bawling our eyes out, we just felt so relieved to be able to do that for them. Now we go out every Friday, i have the kids calling me all week to see where we’re going and what time i’ll be there to pick them up, David and his friends are no longer the aggressive teenagers they once where because they’re to busy planning their friday night outings with their friends and it makes me proud to be a part of that.
There needs to be more programs like this out there yes there’s physical and speech therapy for them when they’re adolcsents but what about they’re social skills, their happiness, Our autistic teens need help, they get lonely they want attention and they want friends, its our human nature to want to be accepted in society. If they suffer so do we.
I wanted to share this with every mother going through what i went through. Our little club is working and all of us together can make it grow, where every autistic teen can be a part of it.
I really praise your organization and all the help that you provide and i really thank you for giving me the opportunity to put my story out there.